CAREN logo

You are here

  1. Home
  2. Support needs of caregivers of patients with amyotrophic lateral sclerosis: A qualitative study

Support needs of caregivers of patients with amyotrophic lateral sclerosis: A qualitative study

Objective: The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS).; Method: Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically. Result A total of four global support needs emerged: "more personal time", "assistance in applying for resources", "counseling", and "peer contact". Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients. Significance of results ALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers' support needs.

Access source material through DOI

Key Information

Type of Reference
Jour
Type of Work
Journal article
Publisher
Cambridge University Press
ISBN/ISSN
1478-9523
Publication Year
2019
Issue Number
2
Journal Titles
Palliative & Supportive Care
Volume Number
17
Start Page
195
End Page
201